Still waiting …

[lizzziep]

Quite a while ago I asked my haematologist to refer me to Professor Harrison at Guys, he says he now has eventually sent a letter via ‘snail mail’ ( royal mail) about 3 weeks ago, however Professor Harrison says they haven’t received anything yet. I rang my specialist nurse and asked if it had been sent, she called me back and told me that the doctor said he had sent it, but that Guys probably wouldn’t add anything or recommend anything for my treatment!

At my last appointment I asked (again) about transplant but he just said I probably wouldn’t be suitable. I am 70 with no other major problems.

Whenever I ask for information it’s like pulling teeth! It’s like he doesn’t want me to know too much. Or that at my age I should just accept I may only have a couple of years. Whereas I would like as much info as possible.

At the moment I feel really well, I have very few M F symptoms, I am on peg interferon, I know I have the ASLX1 mutation amongst others so I feel like I have a time bomb inside me and need to find out what is in my future and what I can do about it.

I’m really feeling quite frustrated. If I don’t get any response via the hospital (nhs) I plan to pay for an appointment either in person or virtual with someone from Guys who may be able to give me more information and better advice. I don’t feel as though tiis on my side.

Rant over!

[Mirabellegage]

Sorry it's been a frustrating journey to get the input from the specialist that you want. I see from previous posts that you do have one of the ASXL mutations (so do I ) - but that might not mean your MF is high risk if otherwise you're feeling ok. I can understand why you feel that time isn't on your side though so hopefully that referral appears soon before you get further into that 70-75 age bracket that seems to be where things start to cut off.

[lizzziep in reply to Mirabellegage]

Thank you

[mhos61]

I am so frustrated for you!

If Guys don’t hear soon then further action is required. I feel at that point you should contact PALS by email at Rotherham NHS. Be firm, it’s not time to be passive. Ask could you have a copy of the letter of referral to Guys (it’s your right)). Outline everything you have already posted here. You could reference you feel their ‘duty of care’ to you the patient is not being met particularly as you feel time is of the essence.

As for that statement ‘Guys probably wouldn’t add anything or recommend anything for my treatment’. How unprofessional and presumptuous!

If you’re getting negative vibes, it’s not a good doctor/patient relationship. I know you’re in a difficult situation at the moment, but maybe transferring your local care to Sheffield might be worth considering at a later stage.

We’re with you Lizzie! Xx

[ConniesDad in reply to mhos61]

I agree! I am under Dr Francis at the Royal Hallamshire Hospital in Sheffield and he and the team there have been brilliant both the haematology staff and the Stem Cell transplant team. Go back to your GP and demand that your care is transferred there. Dr Francis specialises in MPN’s and I never felt the need to seek a second opinion elsewhere

[lizzziep in reply to ConniesDad]

Thank you.

[lizzziep]

Thank you. If I don’t get anywhere soon I will have to consider drastic action! These days you don’t have to attend the actual hospital it can be done virtually - except for blood taking obviously. I have had contact with Professor Harrison but she is waiting to hear from my haematologist so I am hoping to get some input from her - eventually!

[mhos61 in reply to lizzziep]

Yes Lizzie. I live not too far from you and I consult with Guys twice a year by tele consultation. I know I could request a face to face if I needed to, but I’m happy with the current set up.

When I was initially referred to Professor Harrison she requested many blood tests that I hadn’t had before. All of them were done locally and the results forwarded on.

It’s positive that you’ve had some contact with the Professor, just a nuisance that you’re the one doing the chasing.

You’d think there was some form of internal system in the NHS for second opinion referrals…

[lizzziep in reply to mhos61]

I’m hoping for similar tests etc that haven’t been done locally to shed more light on my prognosis. Fingers crossed I get somewhere soon!

[Otterfield]

I'm so sorry you are still going through this. The word "probably" just isn't good enough from the nurse or the doctor. I also think you should contact PALS. Could you also request to see a different haematologist at your hospital, or even ask your GP to refer you to a different hospital? This is your life and you deserve the best care.

[lizzziep in reply to Otterfield]

It is very frustrating that I have already been in contact with Professor Harrison but am still waiting for my local haematologist to contact her. I might try asking my gp to see if they can refer me to Guys.

[hunter5582]

As others have already stated, it appears this doctor is not a good fit for you. You need to be able to trust your care team to provide you with all of the information you need. When a provider cannot or will not provide you with the care you need, it is time to dismiss the provider. This is not drastic action. It is reasonable and appropriate action.

As mhos61 stated, it is time to be assertive. The referral letter is part of your medical record. You have a legal right to see it. You have a legal right to see everything in your medical record at your request. You also have a right to file a complaint if you feel that your right to access appropriate care is being denied. In fact, it is a responsibility to take appropriate action when care is not acceptable. Inadequate care can only continue when it it tolerated.

It may well be that you are not a viable candidate for SCT. That is a decision for the SCT team to make. You need and deserve to have this answer from the SCT experts.

You need to be confident in the MPN care you receive. Suggest that it is not just time for a second opinion. It is time for a new MPN care team.

Wishing you all the best moving forward.

[lizzziep in reply to hunter5582]

Thank you. The main thing I want to find out is whether I am a suitable candidate for transplant, and, if not what my prognosis is. I’m going to try and get hold of my gp to see if they can help.

[hunter5582 in reply to lizzziep]

Suggest following Yoda's advice. "Do or no not. There is no try." The hematologist did not facilitate your referral in a timely or appropriate fashion. As others have suggested, it is time to contact PALS for assistance. Your GP can also send the referral. Time for action ASAP.

[JP1952]

Could you email Prof Harrison's secretary to inquire whether your request has been received? Email addresses can often be found on Google.

[lizzziep in reply to JP1952]

Thank you. I emailed Professor Harrison and she said she hadn’t received anything!

[Looolooo]

Definitely contact PALS. I don't think your doctor has actually written that referral letter.

[lizzziep in reply to Looolooo]

Neither do I!

[Echocat]

Professor Harrison's secretary has their email address on Guy's website. I have several health issues besides ET which make any ET treatment more of an issue. I requested an appointment with her and the local haematologist contacted her. I had a telephone appointment two months later with her, we were on the phone for close to half an hour and I couldn't recommend her highly enough. Persevere. In the first instance you could just email her secretary and ask if the letter from your doctor has been received.

[lizzziep in reply to Echocat]

Thank you. I emailed Professor Harrison and she hasn’t received anything yet.

[dishcell]

Hi

I had a similar experience. My haematologist refused to do me a referral to professor Harrison because he didn’t want a second opinion! But he told me to ask my G P to refer me. I’m so glad I did . I have stayed with my local hospital haematology department and have an annual phone call from Guy’s

I must acknowledge MPN voice for making me aware I could get a second opinion on the NHS.

You could use your GP to get your second opinion .

[lizzziep in reply to dishcell]

I’ll be phoning my gp surgery tomorrow. I agree about MPN voice and this site, I have found such a lot of very helpful information and support. I too would have had no idea about second opinions or that my local haematologist may not have been an expert!

[MWxxxx]

This is very frustrating. I also asked for a referral for Professor Harrison probably about 16 weeks ago now and I've heard nothing. At my last Haematology appointment I checked that the referral had gone but I didn't think to ask how they referred it! I assumed email or some electronic form - hopefully not post! I think I better follow that up on my next appointment. Like others here, I only want a video or telephone call to run through my symptoms and concerns and to ensure I am taking the right medication for me. I did feel very awkward in asking to be referred and I could tell the Haematologist wasn't necessarily delighted but they did do it willingly. Interestingly at my last Haematologist appointment I was asked if I had had an appointment yet and was told the team were very interested in what she had to say! I hope you get it sorted soon.

[Solyesh]

I cannot add anything to all the very good advice already stated - it is past time to contact PALS - I would ask the doctor for an immediate e-mail referral (this is 2023) and if he refuses or comes up with an excuse move on - your future should not be held hostage to what seems to be your hematologist's ego - any good doctor would welcome a well regarded/known second opinion - either a world renowned expert would reaffirm his judgement (wow) or he might learn something (which is always good for all of us) - you have to move things along for your own good - it seems pretty obvious your current care team has their own interest at heart...